POTS

i have alot of the symptoms of pots.ive had all the tests done to rule out anything else.the symptoms of dizziness and shortness of breathe and brain fog are almost constant.My pulse and blood pressure are within "normal" limits while lying,sitting then standing.I do not get bad tachycardia when i stand but it does go up about 20 bpm from lying.My systolic usually goes up about 5 points and my diastolic goes up also 5-10 points  .I check it while lying, then standing.I check it immedietly after standing,then at 5 minutes then 10,then 15.with no noticable changes so why the dizziness almost always?.I do get alot of other symptoms also for years..Almost all of them. So my question is...
   1-Could this still be pots or another form of dysautonomia ?
It just feels like something isnt right.
   2-do you have to have tachycardia and/or low blood pressure when standing to be dianosed?
   3-Does anyone know of any Doc. in my area of Michigan so i dont have to go all the way to Detriot or Ohio?I live 50 North of Grand Rapids. Thanks for any  responses

[Heiferly]

What are your actual resting HR and BP and your upright HR and BP?  

Are your symptoms entirely unaffected by posture?

Yes, you have to have the postural tachycardia (no stipulations on blood pressure whatsoever, that's a separate issue/diagnosis) to be diagnosed with POTS.  A significant drop in systolic (>20 mmHg) or diastolic (>10mmHg) during standing/upright tilt would be indicative of orthostatic hypotension (not to be confused with orthostatic intolerance, which is descriptive of a constellation of subjective symptoms rather than the measurable diagnostic sign).  If you really want to know if it's dysautonomia, an actual tilt table test is the place to start; doing it at home yourself may not be accurate.

A slight increase in blood pressure is often seen in healthy individuals when they stand up and is actually part of the process of the way a healthy body responds to gravity to get blood back up where it belongs.

Considering you're suffering from dizziness and shortness of breath almost constantly, I would be persistent in pursuing further testing.  Trust me, the number of diseases out there is just about endless and the symptoms you are having are pretty non-specific, so chances are you've only had all the tests done to rule out anything else that's *likely*.  You may very well need to travel to either Mayo (Minnesota) or Cleveland Clinic (Ohio) to seek out care at one of the nation's top hospitals if your local doctors continue to hit dead ends or your condition worsens.  

[camtcb]

my acual bp and pulse when lying around is normally from 109/56 to125/83 and pulse is 56 to70. when standing it is around 115/75 to130/85 pulse is normally around 70 to 90 or  it might go up to 105 if i stand up real fast but then goes back to normal within a minute or so and stays reletively normal (70-90bpm) while i stand. Bp never really moves down either. Also i do seem to get dizzier when im up doing stuff for awhile. After reading the stuff you sent me i think it sounds more like orthostatic intolerance but my bp is always pretty good..Ive had a ct scan and mri of brain ,electrophisiology study of heart,ekg's,endless blood work and more i probablly cant remember right now.everything looked good and thats what i dont understand.thanks

[teachr4k]

My 13 yr. old daughter has POTS and since day one,has always been dizzy when sitting or standing up.  It is possible to be dizzy constantly with POTS.  My daughter also doesn't have a huge fluctuation of blood pressure like some with POTS.  What are your other symptoms?  My daughter also has headaches, insomnia, and heat intolerance.  There are about 15 different symptoms and I've found that every person is a little different with this illness.  If you haven't had a tilt table test, I would get that done and that would rule out POTS or related autonomic illnesses.
My daughter goes to see Dr. Grubb in Toledo, Ohio.  It isn't easy to find doctors who know about dysautonomia but believe me, it is worth a drive to get to the right doctor who knows what to do. We drive 7 hourse to see him. We wasted a lot of time, energy, and money on doctors who werent' worth it!  If you really think you may have POTS, I would get the testing done and find a good dysautonomia specialist.
Brenda

[teachr4k]

I forgot one other important point.  This quote comes from Dr. Grubb's article intitled, "Postural Tachycardia Syndrome."

"It should be noted that many patients with orthostatic intolerance due to POTS will not demonstrate orthostatic hypotension (defined as fall of >20/10 mm Hg on standing). Instead, they may display no change, a small decline, or even a modest increase in blood pressure.2 Some investigators have noted that focusing on heart rate overlooks a number of other autonomic symptoms that may be present, such as disturbances in sweating, thermoregulation and bowel and bladder function. It should also be remembered that other orthostatic intolerance syndromes exist in addition to POTS, in which symptoms occur in the absence of dramatic heart rate increases."

So, you could still have POTS even if you do not have a huge change in heart rate. Read other articles from Dr. Grubb.  He explains it thoroughly although some of the articles can be a little confusing for those of us not in the medical field.
Brenda

[camtcb]

my symptoms are:dizziness/feeling faint and brain fog( almost always) sudden extreme sleppiness, no appetite,insomnia sometimes, chest tightness and pain, feeling breathless/short of breathe, headaches(mainly in the front) pressure in the head and eyes, floaters in the eyes, constant adrenaline surges, feeling very weak,heart palpitations,forgetting what i just said or someone else just said, cannot take the heat.....Im sure theres more but those are the main ones. I called dr Grubbs office yesterday and left a message(forgot it was saturday) hopefully they can see me. If not i dont know what im going to do..the only  insurance i have  is michigan medicaid and part a medicare(im on disability and only 30 years old)ive had all other tests with no definite diagnosis..I think not knowing would be harder than having something and knowing. im very scared.how long did it take to get an appointment with Dr grubb? and do you need a refferal? thanks and hope to hear from you soon..  

[Heiferly]

I'm going to slightly disagree with you.  The diagnostic criterion for POTS is inflexible when it comes to change in heart rate; that is the cardinal symptom of the disease and thus the words "postural tachycardia" in the name of it.  What Dr. Grubb is pointing out in the above quote is two things:

1.  By focusing on the "postural tachycardia," many doctors have lost sight entirely of the "syndrome."  Technically, the diagnostic criteria includes both the heart rate increase in upright postures AND a host of other symptoms.  Interesting to note is that several of the other autonomic problems which are part and parcel of POTS for many patients are problems which cannot be formally assessed by the vast majority of doctors because the facilities to assess them are only at that small handful of clinics in the US with fully outfitted autonomic testing labs; not all POTS patients have further autonomic dysfunction* but you can't figure out who does and who doesn't if you can't run autonomic tests.  Otherwise put, you can't very well diagnose your patient with sweating or thermoregulatory disturbances if you're a doctor in StateX and your patient has no means of getting to Vanderbilt for a QSART or TST (or worse, you don't bother to mention to your patient that there IS a hospital in TN that could be offering more targeted testing and possibly more targeted advice on treatment).  Some doctors are indeed entirely ignorant of the host of other issues that go with POTS besides the tachycardia and possible syncope, so it seems this lopsided view of POTS is actually being taught in some medical schools.

2.  There are other diagnoses besides POTS which have symptoms of orthostatic intolerance, without the diagnostic criterion of the 30 bpm heart rate increase on upright posture.  So a lack of postural tachycardia does not exclude a diagnosis of orthostatic intolerance, only a diagnosis of POTS.

*Footnote:  according to publications coming out of Mayo, certain types of autonomic dysfunction are actually an exclusionary criterion for the diagnosis of POTS.  Again we see that lack of consensus in the field.

[Heiferly]

Have they definitively ruled out pulmonary hypertension?  (I'm not trying to say that to scare you, just concerned because of your symptoms and that it's a diagnosis that is sometimes missed unless they run some of the more specific tests for it.)  

[camtcb]

after reading some of the stuff it sounds to me like i have orthostatic intolerance but how will they diagnos this?Will they use the same methods as POTS diagnosis

[camtcb]

ive also had an arterial blood gas (which did show slightly low carbon dioxide) but in the normal range.I thought that maybe this was hyperventalation syndrome but i dont think i hyperventaliate. i also had a pulmonary function test which was normal..i will just feel better if i know whether or not it is autonomic disfuntion or not.im sick of being put off as having only panic/anxiety...i know what panic/anxiety feels like and this isnt it..although i do have anxiety attacks from feeling so crappy all the time..the symptoms are causing the panic/anxiety not the other way around...thankss for listening hope to hear from you soon..also i noticed that your from ohio, how long of a trip is it to toledo from me?a few hours maybe?

[halbashes]

It seems that you've already received a lot of great information.  I just wanted to add a couple of links that you may find helpful.

Diagnosing Dysautonomia:
http://www.medhelp.org/health_pages/Neurological-Disorders/Diagnosing-Dysautonomia/show/827?cid=196

Dysautonomia Specialists:
http://www.medhelp.org/health_pages/Neurological-Disorders/Dysautonomia-Specialists/show/717?cid=196

[supineallthetime]

Could consider the CFS angle on things too... there is crossover for many things.  As research progresses some are finding "mitochondrial" disorders and similar.  Both CFS and POTS/OI are loose groups of symptoms with various underlying (theoretical) causes.  Both remain rather mysterious and treatment approach is similarly trial-and-error or experimental.

Even if tests give a clearer picture, treatment amounts to addressing symptoms by trying various meds & techniques and just seeing what works or brings some improvement (and what makes things even worse, which can happen).  If more things showed up on tests, there might be some "hints" to treatment approaches, but even then, it is trial & error for most things.

It is very frustrating to be having a serious condition but not be "lucky" enough to have clear medical signs.  Even if all feasible tests come up negative, it's not the end of the story.  It will take some patience and a solid doctor, but hopefully your symptoms can be addressed.  Have any doctors been willing to begin trying out various medicines to see if they can help?  Sometimes that process itself can give clues to an underlying condition.

[camtcb]

1-could they diagnose me with the tilt table test alone?2- Also i have constant adrenaline surges to. Does that sound normal for OI? I  have been worrying myself so bad about this that I cant even eat. Im sure alot of how I feel IS anxiety but i cant stop worrying that i have this orthostatic intolerance even though I know worrying isnt going to help.3- Also is the shortness of breathe that comes with this stuff caused by insuffecient blood flow or something else.. 4-Does OI typically get worse over time or does it get worse in days...Ive been feeling worse since I started worrying so much..I go to the Doc. today to get echo to check for pulmonary hypertention which you suggested to rule it out..I will let you know what i find out..The scariest thing is the great unknown..

[camtcb]

Also is it a symptom of OI to have sudden extreme sleepiness alot of the time?Do you know of any other causes?

[Heiferly]

A tilt table test will rule in or out a number of autonomic disorders.  

However, I think we have some confusion here and need to back up a bit when it comes to the term "orthostatic intolerance."  There are a few different classes of terms we're throwing around here.  We have signs, which are closely related to symptoms.  To diagnose a given illness, a doctor must evaluate the patient's signs and symptoms.  "Signs" are objective evidence that can be seen/measured by observers other than the patient; "symptoms" are subjective feelings that cannot be directly seen/felt by anyone other than the patient.  Low blood pressure, vomiting, and flushing are all signs; dizziness, chest pain, and fatigue are all symptoms.  A "diagnosis" is the identification of the nature/cause of the constellation of signs and symptoms.  A diagnosis may be a "disease" (a collection of signs and symptoms with a known cause) or a "syndrome" (a set of signs and symptoms known to frequently occur together but without a known cause).  POTS is a diagnosis--a syndrome, not a disease.  Familial Dysautonomia is a diagnosis--a disease with a known cause.  Orthostatic Intolerance is not a diagnosis, it is a symptom--observable by the patient in the form of various subjective symptoms experienced in upright postures; orthostatic intolerance is a symptom of many different syndromes and diseases including as mentioned above CFS, POTS, etc.  It gets confusing because it can be easily confused with orthostatic hypotension which is not synonymous with OI and indeed many people with OI do not have OH.  

I'm sorry if I made that more confusing rather than less.  The gist of it is that I can't answer specific questions about OI as if it is a condition unto itself because OI is a symptom, not a disease or a diagnosis.  Saying that a person has the symptom of orthostatic intolerance is simply shorthand for saying that they have symptoms (typically dizziness, shortness of breath, lightheadedness, etc.) in upright postures that are alleviated in part or entirely when they are lying down.  

I'm sorry that you are experiencing so much anxiety.  I think it's excellent that you're getting an echo, and that should go a long way toward putting your fears to rest hopefully.  I hope that you'll be able to relax somewhat so that you're not making yourself feel worse with stress.  

I don't really know what to say about the shortness of breath because I'm not very familiar with a lot of things that would cause that in the absence of large fluctuations in blood pressure or heart rate.  Extreme sleepiness is common among several different things that can cause orthostatic intolerance, CFS especially.  Have they done a sleep study to rule out sleep apnea?  I know some people with severe sleep apnea end up with all sorts of daytime symptoms as well because they get such poor sleep and it puts such a strain on your body.